Growing Old…Fast

The roller coaster just keeps going! My transformation from a 28 year old young adult into a 75 year old man is happening faster than the yearly crawl that my upcoming birthday (and life in general) normally promises. Not only did we get married young, have our kids young, get a minivan young, plant a church young, and have my first cancerous tumor young, but now I’m the proud owner of an oxygen bottle that I tote around with me wherever I go! I remember being creeped out as a child by people with the oxygen tubes that went across their upper lip–always wondering “how far up their noses do those tubes go!?”

Every day when I wake up I need a little help from my wife, the pill bottle, and the shower to get my back in good working condition. Due to me still recovering from the surgery and the lack of stomach muscles (because of my paralysis) my back is pretty jacked up. It spasms pretty often while in bed and when I wake up in the morning the tightness across the blades is quite extreme. But on Friday when I woke up it felt different. There were sharp pains in my mid back, side, and upper shoulder. The pains were so sharp that they kept me from taking deep breaths. We had plans later that day to drive two hours out of town to see some dear friends who had flown in from the midwest so I acted quickly and setup a massage for 11:30 to see if we couldn’t work through this stuff.

The massage didn’t make a huge difference with the sharp pains, but between that and some vicodin I was able to have a good time and make it ’till evening. Well, to make a short story not so long, come evening time the pain got worse and my ability to breath got worse. My wife called our oncologist who sent us directly to the ER. At the ER they diagnosed me with lots of small blood clots in my right lung and a few in my right leg. Even as they put me on blood thinners and IV drugs (always quite the fun experience) the pain got so extreme that at one point I found myself curled up on the hospital floor while trying to make it to the bathroom. Finally they put me on oxygen, found a drug that managed my pain better, and even sent me home that night.

It is crazy to think about how quickly things change. A few months ago I was a healthy 28 year old young man. A few days ago I was too young to have cancer. Now I’m a 75 year old man in need of some ear plugs ’cause kids these days play their music too damn loud!

In an instant, in one morning, in one week everything can change. And there’s nothing we can do about it. We can fight it and be miserable. We can avoid it and live in ignorance. Or we can embrace it as a part of being human and grow from it. I hope I choose door number three.

8 Reasons Why Steroids are Bad

Here are my top eight reasons why taking steroids sucks:

  1. ‘Roid rage. Steroids opened up in me anger that I’ve never experienced before. I could get mad at a fork if it didn’t make it to my mouth correctly…and thats no lie.
  2. Backne (as in back acne). I felt like I was in Jr. High again with my whole back, chest, and arms covered in acne! Good thing I’m not much of a swimmer ’cause all the girls would have made fun of me.
  3. Lies. Anyone who told you that if you took steroids you’d be better at sports lied. I’m not better at sports and I’m not stronger and as a matter of fact I think I’m worse at sports now than I was before my steroids. Needless to say I blame all of this on the ‘roids.
  4. Insomnia. Gone are the days of going to sleep at 1am and waking up at 4am everyday. While I do miss those quiet mornings (terribly actually) I don’t miss the lack of sleep.
  5. Water Weight. I’ve got chubby arm pits right now. Did you even know you can get chubby arm pits? It’s due to my body going off steroids, ‘roids cause your body to retain water in strange ways, for me this included asymmetrical chubby pits.
  6. Swelling. This is probably an extension of the water weight, but the swelling that happened in my face was creepy. In a matter of minutes I’d go from normal Ryan to Swollen-Faced-Ryan. It would happen almost immediately and could last for minutes or days. Not cool.
  7. Headaches. The day that I was finally off steroids was the day that my headaches began. For ten straight days I had pounding, debilitating headaches. They’d last from the moment I woke up until I fell asleep. For the first few days no cocktail of Vicodin or Ibiprofin would help and I’d just pound my head agains the wall waiting for relief.
  8. Foot Cheese. That’s right, I said it. While on steroids the bottom of my feet started to sluff off every day. Every day a whole layer of skin on the bottoms of my feet would just crumble off…it was gross…and messy…and would have been painful had I been able to feel my feet.

Creating the New Normal

A good friend of mine started saying the phrase “we’re trying to create the new normal” a lot lately. I like that. I think it’s a good summary of what we’re trying to do with the Grassroots Conspiracy here in downtown ‘Couve. Normal often sounds appealing. Teenagers spend most of their time and energy chasing after this illusive idea of being normal…But as Dave Ramsey would say, you don’t want to be normal ’cause normal is broke. While I’m not necessarily talking about money (though how we use our money to bless the world is a part of it) it is true that we don’t want to be normal! With regard to community and how we do life, normal is to be lonely. Normal is to busy. Normal is to spend every afternoon and evening watching TV. Normal is to idealize self sufficiency. Normal is to eat unhealthy and to eat on the run. Normal is broke (I mean this both financially and with regard to how life is lived). Normal sucks and does not produce the kind of life we were intended for.

Part of what’s been so beautiful in how we’ve been cared for up through this stage of our fight against cancer is that it is creating a new normal in our community. YOU are a part of creating a new normal for what it looks like to care for people in distress. Normal is to respond with help when things are urgent, when things are fresh and exciting, and to respond for a short period of time. Normal is for Jess and I to not ask for help and to suffer quietly in the name of self sufficiency and pride. Normal doesn’t work. Normal is not the picture of community that we are trying to create. The new normal is going to fight to be different. It means that the person in crisis is willing to receive help, it means that second and third waves of help come after the immediate emotional response. It means that lines are blurred, that everyone gives and receives as they are able, that every gift is valued no matter how big or small, and that awkwardness is embraced rather than allowed to hold us from speaking.

So thank you to all of you who are a part of helping to create a new normal for how we care for those in crisis and do life together. In no way are we done or have we arrived (arrival is a mirage, process is a reality…right?) but we are continually carving out a path toward what it means to do life together. The new normal is counter cultural and it necessitates a community of conspirators who are willing to rise up and embrace that counter cultural posture as a part of a movement of people who are different…because if we’re not different then we’ll just end up normal…and who wants to be normal?

Radiation, Chemo, and More (surprising) Good News


It’s been hard to squeeze out an update recently due to what has turned out to be a bladder infection and nagging steroid withdraws (I’ll write this blog post on Tuesday). One thing has not changed: we always receive our news on Thursdays. Another thing has continued to change: we’re getting good news now rather than bad!

On thursday I met with my Oncologist (the week before it was my radiation oncologist) and let me just say that she is amazing. Not only is she excited to work in partnership with our naturopath but she has talked with more doctors from more universities and hospitals from around the United States than I can list off. I can probably honestly say that hundreds of medical professionals have looked at my case; even as far back as June 8th there was a monthly gathering of physicians who all gathered around my case. Their prognosis? That I’d probably not walk again and I’d be dead within a year due to the fact that everything pointed to a glioblastoma cancer. Things have changed.

As of last week the Mayo Clinic has determined that my tumor is a level three astrocytoma (known as an anaplastic astrocytoma). This is huge amazing and wonderful news especially considering that for a month there was no doubt that it was a level four glioblastoma. It’s funny that had we gone into this being told I had a grade III cancer it would have been a sad day–but after you’ve been dealing with the beast known as a grade IV cancer…this is looking pretty good! The jump from a level three to a level four (if I understand things correctly) is huge. While we didn’t speak in these terms–a level four glioblastoma really implies a year of life with hope for a few more. Terminal is the best word to describe it. It’s a beast that doesn’t really die that is constantly attacking your body and moving and taking space, etc. While I have yet to do all the research, a level three is still a cancer that you assume you’re going to live with, but it’s is one that does not immediately imply death. (as many of you know, I am simply writing to you from the medical perspective. Miracles happen that defy all rules and odds.)

The fun of waiting for medical results is not over yet! My tumor slides are in England right now being studied at Cambridge. There are still properties in my tumor that are freaky and odd that they’re trying to figure out. They anticipate knowing more in three weeks, but it will not change how we move forward. On Thursday I start my radiation and chemotherapy–both will last for six weeks. I think its exciting that on the day I start all this good stuff I get to finish the day partying with all my friends and family at the fundraiser down at Pop Culture (if you’re not aware of this email me! ryan@renovatus.com) It’ll be a great and fitting way to end my first day of treatment–in community.

(Update: interestingly enough a few months after they ruled out glioblastoma they decided to ‘reintroduce’ it as a possible reality. And, in fact, they are treating it as such. As it turns out it can often be much more difficult to diagnose cancer specifics as one might assume.)

Blessed Be Your Name…really?

A few days ago my daughter asked me to sing these words to her in bed. It struck me more deeply than it ever had just how powerfully lyrics can capture both the story of life as it is and life as we wish it were.

 

Blessed Be Your Name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name

Blessed Be Your name
When I’m found in the desert place
Though I walk through the wilderness
Blessed Be Your name

Every blessing You pour out
I’ll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Blessed be Your name
When the sun’s shining down on me
When the world’s ‘all as it should be’
Blessed be Your name

Blessed be Your name
On the road marked with suffering
Though there’s pain in the offering
Blessed be Your name

Every blessing You pour out
I’ll turn back to praise
When the darkness closes in, Lord
Still I will say

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Music isn’t really my thing. Jess makes fun of me because of the sheer volume of lyrics that I don’t know. It really is shocking. I just don’t connect with music. But in singing this song to India I was struck by the strangeness of how this song so captures the messiness and brokenness of life as it is and yet also makes an attempt to speak a new reality into existence. Or rather, the song itself isn’t attempting to speak a new reality into existence but is trying to capture a new reality that God is able to speak into existence. That’s what God does, he speaks and things that did not exists begin. When Jesus spoke things happened, reality changed, existence was different. That’s just what God does, it’s who he is. It’s why Christians speak of new birth, its why they cling to the symbolism of baptism, its why they speak of resurrection–because they celebrate the miraculous emergence of new things.

Back to the song…In the midst of cancer, in the midst of divorce, in the midst of whatever darkness that happens to be closing in on us, are we really able to say “blessed be your name”? Is it even appropriate to say that in those moments?! My quick answer would be a resounding “no!” Of course it’s not appropriate to say “thank you Jesus that I just lost my child”. It’s appropriate to scream at God, to be angry, and to be outraged. So often we feel forced to move into a place of happiness in the midst of pain or to act as if everything is better.

Here’s what I think (at least what I’m thinking now). I think that the invitation of this song is not to artificially say “thank you Jesus” in the midst of our dark places. I think the refrain “blessed be your name” invites is to place our hope in the only place we know that can handle our brokenness. It invites us to not mask our grief but to allow our grief to be carried by God who has experienced the death of a child, extreme physical pain, social rejection, and divorce. Claiming the lyrics to this song is to own the brokenness of life as it is now while also placing hope in the only source of hope beyond life as it is–it is to live in the tension of life as it is and life as we wish it were–the exciting part, though, is that in Jesus life as I wish it were is actually a possible reality…and that’s something that brings hope.

Not many songs speak to my heart. Not many lyrics actually stick in my brain. This song did both. Thank you India Jayne.